Could this be a milk intolerance? Opinions and advice please!

[dannid]

DS2 is nearly 5mths old and when a few weeks old was 'diagnosed' with reflux. I use the term diagnosed loosely as nothing was ever tested but this is what the doctors have suggested. The reflux was never severe but he was a lot more sick than most babies and he never seemed to be comfortable. He was put on gaviscon which seemed to work for a few weeks but then the symptoms started appearing again it was around this point I was beginning to stop bf and the doctor suggested we try ranitidine. He has been on this for about a month now and although initially he seemed better he has started getting sick again. I have on several occasions questioned the doctors about whether it could be a milk intollerance...several of my close family members (including my sister) have suffered with milk intollerances from birth and where put onto soya formula. Every doctor I have mentioned it to seems to think its unlikely though. DS2 has in the last couple of weeks developed eczema (one of the symptoms I know my sister has if she has cows milk!). I took DS2 to the doctors about the eczema and they have given us hydromol to put on twice a day and use at bath time. It seems to make it slightly better but poor little thing is still covered and screams the house down each time we put it on, I'm guessing it stings! :( I did consider swapping his milk to soya but having done some research on the web I have been reading a lot about the hormones in it and i am not so sure I want him having it! I am literally at my wits end with it all...I have been back and forth to the doctors that many times in pretty sure they think I'm completely mental...just don't know what to do now for the best. Any advice or thoughts on whether this could be an intollerance would be really appreciated. (please excuse any bad spelling/punctuation I'm typing on my phone and it's such a tiny keyboard)

My GP sent off a stool sample for my similar aged DS for cows milk protein intolerance & lactose intolerance & it came back positive. Only took about four days. Could you maybe ask your Dr to do this for you?

The name of the test is faecal reducing substance test. He then prescribed a hypoallergenic formula called Neocate.

It sounds like your DS has a milk allergy rather than an intolerance, but a non IgE mediated milk allergy so doesn't cause an immediate reaction. In the NICE guidelines for allergies (which you can find online) it clearly says allergies should be syspected with reflux symptoms that seem resistant to treatment, and same with eczema. Also very young babies very commonly have milk allergies. Most however also are allergic to soya.

If the eczema is bad, as in he has red patches and the hydromol stings, he needs to be prescribed steroid creams. Emollients like hydromol need to be applied frequency too, but they won't control a flare up. And every bodies skin is different with many emollients causing problems for people with eczema so they should give your DS a different one like epaderm for example.

He should really be prescribed neocate formula for this. It's a shame it's been left so late because it tasted disgusting and s lot of bobbies wont accept it after 4 months, but most are ok before 6 months.

Go to the nice guidelines for allergies, and go into the document for health professionals. Print it out and highlight the bits relevant to your DS (reflux, eczema and anything else) and take it to your GP. on page 7 it has the list of symptoms and in the non IgE column atopic eczema and reflux disease are listed. On page 8 it says about considering an allergy with these conditions.

On page 11 it says (under non-IgE mediated allergy '.. if non-IgE-mediated food allergy is suspected, trial elimination of the suspected allergen (normally for between 2?6 weeks) and reintroduce after the trial. Seek advice from a dietitian with appropriate competencies, about nutritional adequacies, timings of elimination and reintroduction, and follow-up.' and then on page 12 under 1.1.15 it sas they should prescribe a hypoallergenic formula. HTH :)

Thanks so much choc and special. I have been to the doctors this morning and argued my case...he tried to fob us of with another eczema cream. After saying that I had looked into the NiCE guidelines he said he would give us a formula to try for two weeks, he said he didn't know which to try would speak to a colleague and leave the prescription on the reception desk this afternoon for us. About an hour later I had a call from the receptionist to say that he had discussed it with the practice partner and she felt we should try the aptamil comfort first. I asked to speak with the doctor but e was out so asked for him to call me back. In the mean time I have contacted aptamil and confirmed with them that comfort milk is not what they would recommend for a milk allergy. They said it is used for colic and constipation. The doctor has just called me back and I said this to him he said that he cannot go against what a practice partner says and that if I want to take the matter further to make an appt to see one of the partners. I have made an appt for tomorrow but am so angry that I am shaking...I am so fed up of being mad to feel like I'm making a fuss about nothing! Why on earth are they do reluctant to prescribe us anything?

Because it's expensive, that's the only reason! Take the NICE guidelines with you and wave them in the practice manager's face. Tell them you will not take no for an answer, you want a referral to a specialist and you want a prescription for hypoallergic formula (eg Nutramigen or Aptamil Pepti) for SIX weeks not two (2 weeks isn't loong enough). Make sure they don't prescribe soya formula either. Tell them that otherwise you will be making an official complait to the PCT. I'm really sorry that it has to be this way but in my experience it is a bloody long hard battle to get the right help for your child in these situations. Good luck and let us know how you get on.

I had a horrible feeling that that would be the case....I'm guessing it is cheaper for them to prescribe the ranitidine and eczema cream than the milk?!? I'm going back tomorrow and am hoping my DH or mum can come with me...I think that cause I'm quite emotional about it all they think they can just fob me off...hoping that if someone else is there it'll be two against one! It makes me so angry though....poor little DS2...really don't feel like they have his best interests at heart!

I know exactly how you feel, I get so angry I end up getting very emotional. You shouldn't have to fight for this.

Ideally you should get neocate because nutramigen is apparently equivalent to if a mum had taken most milk out of her diet and bf, but not as completely clear of milk protein as neocate is. If you go onto the neocate website they have a lot of information and they have a symptom checker which you can also do. Maybe you can take some print offs of this and the nice guidelines with you when you see the GP partner.

Apatamil comfort is completely pointless. Do get some steroid creams too. But like freefrom has said you need 6 weeks really to see the full effect (although on neocates website it does say up to 2 weeks to see an improvement!)
Make sure they give you enough tins, lots of chemists have to order it in because it is very expensive (about £50/tin) so ask for 20 tins to cover 6 weeks IMO.

Good luck today. :)

Well I has my appt with the practice partner yesterday afternoon. I took print outs of the Nice guidelines but didn't even need them in the end. Luckily it wasn't the partner that was insisting i try the comfort milk. I explained to him what had happened the day before and he chatted to me for a bit about DS2s symptoms and asked to see his eczema. He didn't really comment on what had happened with the other partner but said he would prescribe an anti allergy formula to try (only for two weeks mind!). He wants us to try the formula for two weeks and then go back onto cows milk formula for a week then go back to see him to discuss how DS2 gets on...I have no idea if this is normal practice but am looking at it as a mini victory!! will see how we get on over the next couple of days surely can't get any worse than bring projectile vomited on at 6 in the morning which is what has just happened!

Oh also....Dr has said to continue giving the ranitidine when we switch the formulas...does anyone know if this is the normal practice? Xxx

I'm sorry u have had such a hard time.

My DS was admitted to hospital at 16 days old after having one days worth of comfort milk (too sore to breast feed so took a break) he had blood in his stools and had screamed for 18 hours solid. He was diagnosed with cows milk protein intollerence and given nutramigen which he is still on. He needed gaviscon till he was six months old also as he had silent reflux. We were also told to wean him at 17 weeks which we did and this stopped his reflux!

Carry on with the ranitidine. When u go back to doctors ask for a referral to a dietitian as babies with allergies and reflux benefit from being weaned early.

I'm so glad you got somewhere finally. What your GP has said of elimination and then a trial back on the milk isn't normally done at this age, but done when weaned and suspecting non-IgG allergies with foods. I would do the two weeks and if you see a huge improvement then don't go back onto normal formula and just go back to your GP. Or just buy some tins to cover you for the third week and then go back and say the third week on normal formula was a disaster!

A large proportion of babies won't need anti-reflux medication when on a hypoallergenic formula because removing the cows milk protein essentially cures the reflux. But some babies like mine and Bonkerz do still need medication. I would suggest just having the formula to start with, but if after two weeks there's some improvement but still reflux symptoms, then go back onto the ranitidine.

I second the recommendation of Bonkerz for a dieticians advise and early weaning. The gut is mature enough at 17 weeks to introduce foods, and more solid food means you're less likely to have reflux.

Good luck with your DS on the new milk! :)

Thanks so much for your advice guys...is reassuring to hear from other people who have gone through the same thing as at time I feel like maybe Im over reacting. All I want is whatever is best for my little buba.

It's pregestimil that they have put him on not aptamil pepti. I gave him his first lot this evening...well DH tried to give it to him first but he wouldn't take it from him but he did eventually take it from me but he was less than impressed! I tried a little sip myself and it is bloody disgusting...poor little thing...I hope it's worth it!

I was thinking the same about the 2 week/1 week tiral to be honest...if it makes him better after the two week trial I really don't think i would have the heart to put him back onto the cows milk formula, think I will just make an apt to see the doctor again...although I think i may have to go back before then anyway as they have only given us 2 cans of the milk and they are so tiny... I'm guessing the doctor I saw doesn't know much about how much babies eat if he thought that would last us two weeks!!!

I also think I'm gonna leave him on the ranitidine for the time being but will get them to review it once we go back in. The doctor did say to me that if he is OK on this milk then they would refer him onto a dietrician.

Part of me really wants the milk to work so that we know what it is and can tart dealing with it but another part of me is really hopeful that he doesn't have a milk allergy...can remember how difficult it was for my little sister and cousins when they were growing up :(

Anyways...thanks again for all the advice I will let u know in a few days how we are getting on! Xxx

GPs have no idea how much formula babies need. We had the same problem when we first started on hypoallergenic formula. I was back & for to the chemist every few days! They all taste yucky too & we had to mix with DS's old formula initially to get him to drink it. Good luck & keep us posted

Ok so his skin is looking loads better since we put the steroid cream on and started the milk but he is still being sick. It seems more watery and he seems to make more of a fuss...as in the sick now tastes more disgusting like the formula tastes!!! He seems to be pooing less tho...although it has changed and is now khaki green but very little of it...not sure if this is all good or bad..or if it's too early to say!! ;-/

Whoops posted before I finished the last message!! Just wondering how long it took everyone to see a change after they swapped milk? Was it straight away or did it take a while!?!? Am now starting to think that maybe little B is just a 'sicky baby'...is this really possible?!? X

It took my DS nearly 6 weeks to really improve but he was still a 'sicky baby' and had prolonged reflux until he was gone 2 yrs old.

Ok thanks for that...it's good to know that might not notice a massive change straight away! His skin seems loads better though and he is now happy to drink the milk without any fuss too

I think it is quite common for their poo to change colour IIRC.

DD was put onto neocate at 8mths as she had a lot of the symptoms your LO has although she was not sicky but had eczema and bad constipation/diarrea (sp) depending on what she had had iyswim. IE yoghurt would give her the runs but soya would bung her up.

DD (4) has been off neocate for a couple of months now (finally!!) as she is tolerating lacto free milk

I still have a couple of tins knocking around if you would like to try it....

Pregestemil and nutramigen our consultant describes to us as being equivalent to bf when you've taken dairy out of your diet like actually drinking milk and having cheese etc but not taking our all foods that contain milk powder. Neocate and nutramigen AA have been broken down into the smallest possible parts so should be used in severe cows milk allergy. With neocate I noticed a dramatic improvement within 2 days, but it took 2 weeks for everything to fully settle down. Maybe take up simpsons offer. Or you can but it, but it's seriously expensive - about £50/tin.

The poo and smell of the anything that comes out either end definitely changes, with neocate our DS has seriously offensive smelling poo, but only goes once a day instead of 8 times a day!

Thanks everyone for all the advice. His skin is defo looking better and he is defo pooing less and being sick less often too.

I saw our health visitor today and she agreed that his skin looks 100% better. She has said to try a skin test with the cows milk formula rather than give it to him for the 3rd week like the Doctor suggested. She said then to take him back to the doctors and let them know how the skin test has gone and that I want him to be referred onto the local dietician. She said that if for any reason they won't refer him then to give her a call and she will do it for me am finally getting somewhere!! (shame she didn't have this atttitude when I last suggested to her that it could be a milk allergy!! )

She also said that she has no idea why the doctors have given him pregestimil as she said normally aptamil pepti or neocate are given. She was quite surprised that little B was even drinking it and said that the dietician will prob change the prescription when she sees us.

Sorry simpson forgot to say thanks for he offer of the neocate formula too,...think for now I will leave him on the pregestimil and hopefully the dietician will change for us when we see her!

Any update dannid? I'm glad your HV is being helpful now. I'm hoping you have made more progress.

Hi all, not much to report. Little B is still being a little bit sick....but loads less than before. I realised yesterday when putting him to bed that he has has the same gro-bag on all week...this has never happened before as nearly always after 1 or 2 days he had puked over it!!! I've also not had to change our bed covers all week...at his worse I was having to change it every day cause of the projectile vomit!! So definitely an improvement there!

His eczema has come back up again since yesterday tho ...not as bad as before, it's only on his tummy and back at the mo but I think it may be because the hubby got him changed yesterday and probably didn't think to cover him in cream like I normally would have?!?! Is it normal for them to still have the occasional flare up even if they have changed milk...bearing in mind this is all his diet consists of atm?! From what i remember from my sister and cousins they all still had terrible eczema even tho the cows milk was removed from their diet?!

He is still pooing lots less as well...averaging once or twice a day now instead of four or more!

I have just this morning tried putting some of the cows milk formula onto his arm to see if his skin reacts...so far nothing has happened...not sure if it would take a while or not? I'll keep an eye on it tho and see if anything appears! Will let u know how we get on! Xxx

A skin reaction on contact would only occur if your DS has an allergy to milk rather than an intolerance plus even with a 'true' allergy, reactions on skin contact do not always occur, it depends on the child.

With regards to the eczema, I'm afraid that for most children there is no miracle cure. Removing foods they are allergic or intolerant to will generally improve the eczema but not necessarily get rid of it altogether. It is a case of managing the eczema well to minimise flare ups and deal with them as quickly as possible when they do occur. My DS has flare ups when he's not very well, when his allergies are bad and when the seasons change (as well as some random flare ups that I can attribute to anything in particular!). I always hoped that once we worked out what he was allergic to that his eczema would go away but sadly it didn't.

Hi! Don't know if this might help or not, but since it made a difference to us, I bang on at everyone about it! My baby had terrible eczema for a while and I thought it might be another food allergy. Actually, it turned out that she was allergic to the washing detergent that we used. Switching to liquid soap flakes for us all did the trick - you would now never know. It worked for my husband's niece too! Thing is, if it is the detergent, you have to switch for all washing, as traces of a detergent can remain in your machine for up to 10 washes!!

Thanks freefrom that's really interesting to know. I was staring to think maybe we had got it wrong and it isn't the milk...but like I said im sure I remember my sister and cousins all still having terrible eczema despite the fact that they were only ever given soya.

dairy I don't think it is the washing powder that's doing it...we very rarely use the same powder for long, cause I only ever buy what's on offer and he has been the same with all the different types/brands I have tried. Thanks for the suggestion tho.

Am going back to the doctors today as technically Little B's two week trial is up. I don't want to put him back onto cows milk now seeings as things have improved since we changed the formula so I have to go back and 'plead' our case again and hope that they will refer us onto the dietician this time!! I think i may actually just tell them that I gave him a bottle of cows on the weekend and he reacted badly Wish me luck. Let u all know lata how we get on.